At the request of users I have started this discussion for users whose PMR/GCA has gone into remission and who are off steroids. It can also be used for users still on pred to ask questions of users who have achieved zero pred. I have added information to the pinned discussion for PMR/GCA Resources https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 linking to this discussion.
Thank you - I think it's a brilliant idea and that some people are off steroids and some have gone into remission. It gives me hope that some day it may be me possible and not just a dream.
Me too Pat, I'm now on 8mgs, and hopefully I will one day get to zero too. How are you feeling today after a couple of days at the new dose? Regards, christina
GCA went into remission after 5 years. Now into 4th year - I took my last steroid on 31 December.
5 of us met on this site and were so pleased we met each other. The end result was a National Charity (formed by 25 people) which covers the England, Wales and NI. Scottish Charity (the first in UK) and one which operates in the North East of England and which has overseas email members. Links to these charities can all be found on this website and then you can find it a Support Group is near you.
Why do I still contribute, because a lady in Scotland helped me through my first horrific six months. Club Zero patients can help others on this journey that no-one every undertakes willingly.
Thank You Moderator for all your help and assistance over the past 10 years.
Wow! I am super thankful about this new thread and must say this forum has given me a huge boost of energy.
My goal is to join Club Zero. You give me a new window of hope that I can find the way.
Thank you, Emis
.i didn't see your added link somI can find Zero Prednisone Discussion.
can you post it, please
I've added the link to the pinned discussion in my initial post. This is the list of resources etc that is at the top of the PMR group page. As I have commented elsewhere, if any user has any suggestions for that pinned list of resources send me a Private Message with details.
Hi Christina, thank you for asking how I am. You being down to 8mgs is just fantastic. I thought I was having a flare last night. My thigh muscles were throbbing and I had to take 2 painkillers at 4.30am. I really don't want to go back to 10mg, I am going with it but I have learned that I will not be reducing by 1mg next time, it will be .5 for 6 weeks. How are you reducing?
Very many thanks for setting this up, Alan - several people have mentioned to me recently that they would like to hear from those patients like myself who have recovered from both PMR and GCA and steroids as it gives them hope when they are struggling.
Many years ago now, when diagnosed and alone with something I'd never heard of, I contacted a lady who had produced an article in a magazine about her journey with PMR and GCA, and she suggested I looked at this site. I never looked back, and in spite of having been in remission and off treatment for three years now, I want to remain loyal to a resource that helped me in the hope that I might be able to help others from my experience.
So big thanks are due to you especially, Alan.
MrsO
My Prednisone Poem
I want to be in club zero.
I am an addict.
I criticized addictive behavior before the pmr.
Now I know.
I took my first dose, and was hooked.
A love-hate substance.
I would do what it would take to get it.
My, how perspective changes.
Dear Dan,
It is amazing how perspectives change and overnight. I am a swing dancer--Lindy Hop, jitterbug, west coast and a few others like a touch of Balboa on a good day or DC Hand dancing.
I am also a publishing poet but I know your poem is not up for critique just for subject matter comment.
How long have you been on the pred med? Me only since mid June and a low dose -- 15 mg and now as of this week 12.5. I am back to feeling good and getting my energy back. after 7-8 months of going down hill, I'm thankful for that dangerous drug.
Hi pat, hang on in there, this could simply be withdrawel, but if the pain etc, simply doesn't fade away over the course of 2 weeks and each day you get up the pain and discomfort is worse than the day before then just think that it might be a flare, but at least for the start of this reduction just clear the decks and take things that bit easier.
yes, definately only reduce by .5 next reduction, you are now at the critical stage whereby I had a flare the first time I reduced from 9 to 8mgs. I went back up to 10and very slowly reduced down yo 8 which is where I am now.
i sort of do Eileen's dead slow and almost stop method but only do 4 days old. So I do 1 day new, 4 days old
1 day new, 3 days old,
1 day new 2 days old then 2 weeks of 1 day new 1 day old, then I go onto all new there on in and I will stay on 8mgs for 6 weeks, then try 7.5. As you know I only ever reduce by .5. I have noticed that now I have reached 8mgs I suffer from fatigue which is a symptom I never suffered from at the higher doses. My rheumatologist has said that as long as the fatigue remains sporadic then not to worry but if it becomes an issue to pop along to the GP.
but you are doing really well, so listen to your body and don't rush things. All the best Pat, regards, christina
Dear Karren,
A dancer. To fall from a higher cliff surely will injure more than a hod carrier like me. I like to think that I was 10 feet tall, and bulletproof, but, no.
And poetry: less words, more meaning. Wrote another about pmr:
https://patient.info/forums/discuss/my-dream-403134
would welcome any critique. Hardly claim to be a poet.
Been on pred for 1 year 4 months, started @ 15 mg, down to 4.5 mg/day. Better, but still feel it.
I had recovered from undiagnosed PMR 12 years ago. I lasted 1 year.
Notice how we all say we are "getting" energy or better. we're all working on it.
Regards,
Dan
WOW! Thank you so much for all this information. It was a god send to find our exisiting forum, I would be lost without it, but I have to say all this information and charity that is available for us sufferers is amazing. I will be in touch with the charity and buying some items of information and also the Pred booklet.
Thanks. I am excited to say that I am almost there! After 17 months on Pred I am down to 1 mg daily. I feel pretty normal except that I occasionally overdo because I feel normal, and the next day I need to take a long nap. I am not quite as strong as I used to be. From what I read on this forum, I have had a better time of things than many.
Christina, thank you so much, it means a lot to me when someone takes the time to type and show me what to do or what they do. I am in a place where nothing makes sense. The DSAS method even when typed out I cannot get. I have written it down in a wee book that I just keep for PMR dates and reductions. Also my ESR and CRP results. It will make sense some day. At present I am in no pain, but even if I was I would still try to stay at 9mg and ride it out. Thanks again Christina and Good Luck on your own journey.
I have deleted a couple of comments as they are discussing specific diets in detail and/or recommending products, books etc which we do not allow in the forums. If users wish to discuss specific diets (without product placement) can I ask that you please start a new discussion on this rather than fill this discussion with full diets etc.
If anyone has had a post deleted that they have not got a copy of send me a Private Message and I can retrieve the text. If you want to recommend specific books etc not allowed here use the private message service to discuss or to pass details on if other users want these.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Regards,
Alan
Hi! I am Ragnar from Sweden and I am probably one of the "oldest" - not in age maybe (soon 78) but years since Zero Pred. I finished in December 2008 and I haven´t had any flare and my 3 ½ years with Pred were easier than for most of you. I didn´t have any bad pain. I had pmr as well as GCA. You can find my history in the contributors short stories on this forum.
My hardest time was when I had fatigue while tapering - see my story. When I came to 5 mg I found out a method that worked for me from 5 mg and to 0, and I have seen on some boards that other persons have tried it with success and sometimes made modifications to drag it our even longer than I had to do. It was named Ragnar´s method by those on the Northeast forum. Eileen modified the method to make the tapering much slower as everybody cannot taper as fast as I did and it seems as if most people on this board take the extended taper that Eileen published.
On the Northeast forum I took the initiative to start Club Zero in April 2012. The editor split up the Club Zero questions in two parts. One is just for the members - no other persons should post. The other is where the members put questions to the members of Club Zero. In that way there is no discussion when the members only part is used. The advantage is that it is easier to follow the advice from the members of Club Zero without mixing with new questions coming up.
As I am going to the USA on Sunday on a two weeks visit, I may not be able to answer possible questions for some time.
At last - my advice is to take it easy when tapering. A tapering with .5 mg from 10 mg is recommended and the closer to 0, the more important it is to go sloooow. At small dosages there shouldn´t be any hurry as the side effects are very, very small.
Good luck
Hi Ragnar/all,
The brief histories discussion is no longer pinned so I've put the link to your story on the NE site below assuming this is the correct one.
http://www.pmr-gca-northeast.org.uk/stories.php?id=12
Due to the way these forums are set up we cannot split as you say NE has done as we do not have private members groups. If it is felt this is not the best way to go with this discussion/idea I could create a completely new group called Polymyalgia Rheumatica and GCA - Club Zero for individual discussions/questions but not sure if this would cause "splintering" or overlap/repetition. I am open to any suggestions from users about the best way to go and it is easily achieved from my end.
Regards,
Alan
Yes, It is the right link. I understand what you mean and I think that you did the right thing when you moved away some posts that were "off subject".
Regards,
Ragnar